Feelings during treatment

A cancer diagnosis can cause a range of emotions such as shock, anger or fear (see 'Learning the diagnosis and treatment plan'). To some people the diagnosis seems unreal until treatment starts, and coping with treatment can be traumatic and frightening.

Some people recognised that in the early stages of treatment they hadn't wanted to admit to themselves or others that they were seriously ill because they were frightened. They tried to keep their lives as normal as possible and didn't want others to treat them differently. A woman who gave birth shortly before her diagnosis said she couldn't allow herself to be unwell because she had a baby to look after.

Yeah, I mean, just from the kind of way, I think the way I approached it I, from the first time I told them about what was going on, the way I absolutely abhorred trying to explain what it was, I really didn't enjoy it because I didn't want any kind of sympathy or them to kind of think, 'Oh God', you know, how serious it was. I perhaps didn't want them to appreciate how serious it was perhaps because I didn't appreciate how serious it was and perhaps because I just wanted everything to carry on as normal. So I'd tell them in this kind of jokey way and go, 'Oh it's nothing serious, I'll get over it, get six months off work so what better than that ay?' So I'd kind of take it in that sort of manner and yeah I didn't want to feel excluded by the group for something that a) I didn't cause, or an illness that I didn't feel was really affecting me physically so it wasn't going to affect my life. And just didn't really want anybody to kind of give me any kind of special behaviour or attitudes towards me. I didn't want any kind of favours or anything like that, I just wanted them to treat me as they would have normally done so and everything to have carried on really, just to go down the pub whenever they wanted to and make a joke of whatever, just carry on from there. Obviously I'd be kind of sensitive to various sorts of issues that I'd never really thought of before and obviously I'd kind of think of things when people were kind of saying, you know, other sort of issues and perhaps it would go across to other sort of things that I'd been through similarly. Sorry I'm not explaining myself again very well.

Take your time and think about it, don't worry.

Yeah I guess it's like when your friends kind of joke about various issues which are a bit more sensitive to areas that I was more aware of. Sort of like, I guess there are kind of jokes around people dying and cancer and things like that, and you are a bit more aware of those sort of issues, and perhaps when people get, people won't get misinterpretations because, although cancer has affected a lot of people I still think there's a great deal of ignorance around as to what people actually go through and the day-to-day aspects of cancer and what's involved basically. I think there's still a great deal of information that regular people find out. And some of them will kind of approach it in a kind of, yeah, they don't know at all, but it was the people that kind of assumed they already knew everything about it, and that's just what people are like basically. They're going to assume they know everything about everything anyway, so those kind of people would kind of rattle you a little bit but if they're your friends and you know what they're like anyway, you kind of expect it. So people are just going to be like that, they're going to know everything about everything anyway and whatever you tell them isn't going to change their opinions. So that kind of thing, I kind of had a very laid back approach to and didn't want to be treated any differently to how I was normally really. So I'd just try and keep everything as normal as I could do for six months and just try and get through it in my own way really.

A young woman said it took five years before she could say she'd had cancer. She felt angry and resented being told she was lucky to have such a curable type as Hodgkin lymphoma. The treatment made her feel more ill than the lymphoma itself and her post-treatment check-ups were unwelcome reminders of her illness. A man whose Hodgkin lymphoma relapsed became angry that it hadn't been cured and that he would need more treatment which would make him infertile.

The word 'chemotherapy' can frighten people who have preconceived notions of what it is like. For some the diagnosis became real to them only at their first treatment. When told she needed a central line put in her chest to administer chemotherapy, a woman said, “I'm not having a tube sticking out of me for six months because that's what ill people get, and I'm not.” When she came round from the anaesthetic and saw her drip stand she accepted her membership of 'the ill club'. By contrast, a man expected his chemotherapy to be fine and joked with the nurses when the drugs were administered but soon started to feel ill. A woman who thought that six months of treatment seemed interminable and was keen to start, became upset when it was delayed.

I was really shocked when I found out that the only way the consultant thought to go treatment-wise was chemotherapy. I think it's such an emotive word and just brings up so many other issues, especially being a young female, wondering what would happen, whether in the future I'd be able to have children. And I think that was the most scary thing at that time to me.

I think I was very lucky in that we didn't need to start treatment straight away. And the prognosis was so good, so there were times to investigate whether we wanted to do anything to ensure that we would be able to have children in the future. So for these reasons I didn't start my chemotherapy for about six weeks after my diagnosis, which I think was helpful for me as well so I could get more information from other sources and help myself prepare mentally and physically for the chemo. I was told I'd probably need six months of chemo, which then eventually started in the middle of August 2004.

Didn't know how I was going to cope with it. I think that was the scariest moment of my life so far, the morning I had to go down for my first chemo. My parents, my partner were so supportive and they all came with me on that first day. And I met four most wonderful nurses and I think it was their knowledge and expertise and their day-to-day dealing with everything that helped me get through the chemo. It's quite a scary thing to go into a day unit with other people having chemo and different treatments and sit there for sort of five hours just watching a load of really toxic drugs enter your system and not knowing how it's going to affect you.

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Age at interview:

44

Sex:

Female

Age at diagnosis:

36

Background:

School learning mentor, divorced with three children aged 16, 14 and 9. Ethnic background: White British.

And for one, for a person who cries a lot, as I say the only time I really went to pieces was that first day in the hospital when I took the first drug, because then it really, I kind of think I was just floating along with it at first because everything happened so quickly. And then to actually be faced, when I actually took something or something happened, that just made it real, more real, it just made me kind of, 'Oh my God this is really happening to me', because everything was kind of, was it really real? You know, I'm floating along, people are telling me things, but is this actually happening to me? I don't know, but then yes it was.

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Age at interview:

54

Sex:

Female

Age at diagnosis:

54

Background:

Housewife, married with five adult stepchildren. Ethnic background: White Caucasian and Slav.

So I had that and then I went in for my chemotherapy. And the first real bad thing was that my consultant hadn't signed the consent form or hadn't had me sign it, some form that he and I hadn't signed, and he wasn't in that day and they had to find another tame doctor who would do it and they couldn't find it and it was all sixes and sevens. I was hanging around waiting for this much wanted treatment to start and I couldn't have it because I hadn't had this form and I was going crazy. I've always been funny about time and punctuality and I kept sort of going upstairs saying, 'But please, I'll go and find a doctor, just tell me what to do. Can't I just find someone somewhere?' 'No, no, no it doesn't work like that, I'm sorry, I'm sorry.' And I was winding them up and it was terrible behaviour, I was quite ashamed of it. That was nothing to the second treatment.

The day ward was at sixes and sevens, they had so many patients, it was the most chaotic day I'd ever, I ever was to witness there. And they so fixed the drip that every time I moved it came undone and it bleeped, it had a slight fault in it. I went absolutely bananas. I don't mean that I had hysterics, and I didn't behave so badly as to try and put myself in front of other patients, and there's some terribly sad patients, there was a poor old bloke who he was clearly dying and he was incontinent and he was behind a screen and you could hear him and it was so pitiful. And at the same time I was in a complete panic and I was ashamed of myself because this old man was there and there were lots and lots of other patients.

But every time the drip went beep, beep, beep I sort of leapt up like a hysteric and strode over to the nurse, 'It's doing it again, it's doing it again, it's holding me up, oh help, help, help.' I just could not, I just couldn't get a grip, I was terribly, terribly ashamed of myself and I remember two of the cancer nurses looking at me and saying,' Look, have you got a train to catch?' And I took them seriously so help me, I said, 'No I'm not allowed to catch trains but no, no I can't be,' 'You haven't got a plane to catch?' 'No, no I'm not allowed to fly at the moment but I've got to meet my husband and I'm letting him down and oh, oh help.' And I just felt helpless and I rang him up and he said, 'Look it's not your fault, don't worry, just don't worry.' And he really was calming me down and they were all trying to calm me down, I was just, I was a disgrace. It's just so mortifying thinking about that.

Some people had felt happy during their treatment because they were confident it was working. A woman who had chemotherapy over a long period said it became a way of life. Some accepted that although the treatment disrupted their lives, they just had to get on with it. One man found it helped him to try to purge the lymphoma from his body by swearing at it in the shower.

I mean I used to go in and there were some poorly people about but I didn't seem to be poorly, and people would look at me and they'd think, 'Well what's she here for?' But it were only when I turned round you realised I'd no hair because my baseball cap didn't cover that bit. But I were really cheerful and everything, I just, I enjoyed, I'm not saying I enjoyed the chemotherapy, but I knew that whatever they were giving me were making me better. And I think that's a lot of what kept me going, definitely kept me going.

You've got to be so positive about what you want, the way you want to do it and you just do it, you go for it, and it really does help. I think if you panic and start thinking, 'Oh this is going to happen, that's going to happen', you'll be poorly. You've really got to think, 'Right, I'm having this done, I'm going to go in, both barrels, take the lot and deal with it'. And I know it sounds harsh but in reality that's what you've got to do, you've really got to just think to yourself, 'Go for it', whatever they can give you to help you, take it, accept it and deal with it. And I did, and I really did. I mean I didn't know what really to expect. You get all the information and you take as much as you can in on board. But when you're actually having the treatment you've still got that niggly feeling of, 'Right, well I wonder what's going to happen next?' But then again you've got to think to yourself, 'Well whatever happens next I'm going to deal with it, no matter how hard it is I will deal with it'. And that just takes you through that little mile longer, you know, you get that extra mile thinking that way, that no matter what you're going to fight it, you've got to have that on board I think, definitely.

A man who spent five months in hospital said that he felt dehumanised by his treatment. Diamorphine gave him an artificial sense of happiness but he disliked the loss of control that went with it and found it difficult to come off it. Another worried about whether his response to treatment was normal. Others said they had been so busy dealing with the practicalities of treatment that it was easy to ignore their feelings until after it finished.

Pharmacologist, single, no children, lives with his parents. After his treatment he went to do a pharmacy degree and wants to work in a Teenage Cancer unit.

The other thing about chemotherapy and being ill is really dehumanising. You don't feel sort of as though you're a person anymore. I mean I was 16, not exactly, I mean I don't really regard myself as aesthetically pleasing or anything but I mean you do think that you know you're a human, but rolling around in the bed and having bed pans and just having diarrhoea all the time and people checking up on you. And the measuring, everything, I mean they measure how much you wee, how much you've been sick and how much you've done whatever, and its just awful. I mean you have to say everything you just feel as though you're a warmed up piece of meat on a bed really just there to be a pin cushion.

And its strange because you do, you don't, I mean private things like going to the toilet you can't do that in a hospital, you can't, there are people are watching you. And you have to do that and you have to keep a brave face on and it's very difficult to kind of keep your mind focussed when you just feel as though you're in a glass house, everyone's watching you, everything you do is being monitored, I mean people wiping you down and stuff. And I did find that very hard.

I remember just at the end I was sick and I had a nasal gastric tube and it came up and I pulled it out and I wasn't worried about it but I thought, 'What's this?' And then they sat me down, two nurses sat me down, one to hold my head back and one to feed this tube down my nose. And that was another, just another sort of dehumanising thing that makes you feel, it's really strange not being able to eat, you wouldn't think that that would be a really weird thing but not eating and having your food through a tube in your nose, it does something that is very difficult to explain, it's not as though it feels as though, that's another thing I mean it's another thing that stops you from being who you are.

I mean sitting down and eating three square meals a day is a sociable thing to do, you sit down and even by yourself just watching the television with a meal on your lap is, having food artificially pumped in you just makes you feel more like just a wombat piece of meat. Because that's effectively what you are because everyone's just worried about bugs and things like that. And you're in a clean room, you're not allowed out, I did feel as though I was this someone, sort of a big pin cushion I suppose.

Several people described the time when they had felt at their lowest. For one this was when he felt weak having starved for several hours before having his central line fitted. For another it had been when her chemotherapy was delayed for the fourth time because of low blood counts. For others it was when they had to struggle to hospital for their last treatment while suffering from the cumulative effects of chemotherapy. Having finished the planned treatment cycles, some people were told they needed more and found it hard to motivate themselves. One woman had been distraught at leaving her children to stay in hospital, but tried not to show them her feelings. A man in hospital for a stem cell transplant had felt isolated from normality. Some people said their lowest point came after they had had several courses of unsuccessful treatment and didn't know what else the doctors could try. Other things that happen can add to the burden of illness and treatment. For example, an unemployed man living in a remote place became depressed when he couldn't get to hospital for treatment because his car broke down and he was refused state benefits.

The last month actually was the worst because I knew it was near the end, and it was like, 'I'm nearly there'. And it was harder, and going in was harder.

I remember the last, almost the last treatment, every time we went to get the treatment I'd be like, 'Mum hurry up, hurry up we're going to be late', and the last treatment I remember thinking it was because my emotions were beginning to creep back in, I was thinking, 'I don't want to go'. And I'd never thought that before. I thought, 'I don't want to, it's going to make me feel really awful and I really don't want to feel like that, I hate it'. And I thought, 'I have to stop', and I was opening up a bit and I thought, 'Oh it's just one more'. And I went and obviously I did it, but then I was, the last month I was sick again, I was quite sick again, I think just because it was the build up over all the six months of time.

And that was quite interesting to me. So and I then after I had the last one they said, 'Yes you've been brilliant, it's cleared up, we can't see anything, we did another scan at the end', and they couldn't see anything. They said, 'Right we're going to take out your Hickman line.' And that was horrible, that is the one memory I have that, and then I was like, 'So you're going to give me another operation?' And they said, 'No we're just going to pull it out.' I'm like, 'You're just going to pull it out?' And with the Hickman line, they put it in under a general and the point is it goes in, in your chest and it goes under your skin for, I don't know, four or five inches to stop the infection, and there's a cuff that holds it in, in the middle of that, and then it goes into your major vein to give you directly the drugs and to take blood. And as it turned out because my body had healed very well the cuff that held it in had really, all the tissue had grown into the cuff underneath my skin.

And so anyway I went in to get it taken out and they just gave me a local round there and they started to cut it a bit. They tried to pull it and it wouldn't come, and my mum had to leave the room, she' And they for about twenty minutes they tried to pull this thing out and, even now when I think about it, it makes me feel, because I was just like, I was crying, I was really crying because I was, 'This is', I can't stand it', it was really sore. And they actually then had to cut up and give me more, and they said, 'It's just healed too much.' And then they eventually pulled it out. And it probably wasn't as long as it felt like, but it felt horrible and it felt like, 'I've done all this six months of chemotherapy, I've done it and now you're going to hurt me, you know, what's that about?'. And I knew, I mean it was because I was tired of it all by then, I was like I can't, I'd done six months of letting them do things to me and by the end I was like, 'Can I just stop now please?'

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Age at interview:

24

Sex:

Male

Age at diagnosis:

16

Background:

Pharmacologist, single, no children, lives with his parents. After his treatment he went to do a pharmacy degree and wants to work in a Teenage Cancer unit.

It's very hard because I was only 16 and I didn't know what depression was. I mean depression's kind of strange, I don't know. I mean there was one, I think there was one period I just was depressed, I was just so depressed I couldn't stop it. I mean it was just one episode that I was depressed in. I was depressed after my therapy but during my therapy there was this one, I think it was the fourth episode, that I was depressed, I became depressed, it was, it's a weird thing, depression's like you can't' Like now I can sit and watch the television and be quite happy about watching the television, I quite enjoy it, get home and kind of look forward to getting home. I look forward to taking my socks off and going to bed, that's my' feeling on my feet and that's nice, little things like that are nice, little things like stroking my dog or talking to a friend or driving my car or something, its nice, it's a nice feeling. And you get kind of a buzz from it, you get a buzz from eating, you get a buzz from eating chocolate, you get a buzz, you know, just sort of like nice things, the sun coming out' that's nice, that's happy. But when you're depressed these things don't do anything for you, they don't, they just, there's nothing, it's just everything's, I don't want to be a clich' and say everything's black, but nothing does, nothing gives you kind of'

Pleasure?

Yeah, there's no stimulation from anything, you don't get stimulation and the stimulation that you normally get from, I mean because when you're not depressed you can sit in a room and just, you'd be quite happy to sit in a room and just wait half an hour, but sitting in a room and actually, and not having, not any, and sitting in a room when you're depressed is the most, is awful because it feels as though' I suppose the way I used to think about it is like all my, like when I wasn't depressed all my senses were sort of out. So like things that I did externally, they kind of gave me pleasure.

Uh hmm.

Like just talking to people or just making jokes or just talking to people who are just like the tea lady or something, just talking to people made me laugh, it made me happy because I could feel things. But when I was depressed all my senses were inwards and there was nothing in me that could make me happy, so that it didn't matter what anyone else did outside, externally, anyone else did outside of my body and my head that would make me happy any more. And it was something I had to kind of almost, I felt as though all my feelings were sort of directed inside of me and I couldn't, and there was nothing in me to make me happy any more, there was nothing in me. That was very hard, a very hard period to go through.

I didn't refuse any medicines or anything, I didn't refuse anything but I just remember I felt as though my sort of soul and my kind of will to fight had just been, you know, the kind of fire had just been put out in me. I felt that for a while. I felt very low, very hard to, I couldn't bring myself to sort of cope with fighting this illness all the time. And it wasn't as though I just wanted to die or anything, I just couldn't do anything, I felt as though my heart had just stopped going in to this, you know, my kind of drive had stopped.

But I remember being like that for a week or two. That was quite bad. I remember being very, and as though every minute took hours to get through and there's no, nothing, not even getting better would make me happy. Nothing could make me happy because everything was, there was nothing.

Some people described turning points in their attitude to their treatment. One woman's first turning point was when she survived a bad infection. Another was when, after several unsuccessful treatments, she decided it was working and she would survive, despite her doctors' doubts. A woman who became upset at her first two treatment sessions decided at her third that she was happy and would not get het up again. Both women achieved remission.

During your treatment, were there periods in which you felt low and tired?

Yeah. There was one time, my brother couldn't make it there one night, so I stayed the whole night in hospital, and I felt, I didn't eat, so I was really kind of distraught, and the drugs kind of made me a bit dazey and stuff, and I listened to a transy sort of music and stuff in my ward, and that was probably one of the most changing moments of my cancer time. The music sort of went along with the scene that I was looking at, and the people, like the kids and stuff in the ward, by five in the morning, six in the morning, they were all awake, playing around, because they'd had treatment all night, so now they can play, so they're all up and stuff. And I was very knocked out and not sleeping and stuff and the music went along like an instrumental to the kids playing. It was really dancey sort of music, and I was kind of dazed anyway, like I said, so it felt like it, I felt really good, because I knew that I was almost through it, I was about two months, three months into it, and I was getting better. So I knew there was hope. At the same time, the music sort of made me really feel optimistic about it. I felt that everyone else has, everyone in this room, we've all got an illness, but we're all going to get out of it in our own way, whichever way it was. Some of them were really bad, some of them had really life-threatening sort of things, and mine wasn't that bad. So I felt lucky in a way, and I felt really good. That was one of the times that I changed, I became really optimistic about it, and I didn't at all sort of give up, I think.

A man in hospital watched a war film containing a motivational speech to the troops and likened this to what he was going through - that gave him a fighting spirit. A woman disliked people referring to her cancer experience as a battle because not all the strong people won. She preferred to call it a journey because people have little control over it.

During treatment some people considered that they might die from the illness. Some were frightened but took comfort from talking about their fears, as well as their health professionals' positive attitude, or thinking that the treatment was working. Some had woken at night worrying. Others had not been scared of dying but worried about their families. A woman who knew the chances of her surviving a bone marrow transplant were low planned her funeral but felt serene not distressed.

It also helped at that time that my godmother had introduced me to kind of homeopathic remedies, not anything specifically, just kind of, well Shiatsu is specific, none of the kind of herbal teas or anything like that. It was just kind of Shiatsu massage, which is like a form of acupuncture in massage, and through that I'd kind of met this guy who was the practitioner and he was really useful. Because he was a step away from everybody else I felt I could talk to him about all these kind of fears that I had, about all these issues that I had, and that was probably really, really useful because everybody else I felt was a bit too close. I didn't want to admit my concerns and frailties. And I did have them at the time, I just didn't want to worry other people with them. I didn't want to say to my parents, 'Oh look, I'm really worried about this' because I knew that would then worry them. I wanted to show them that I was fine, and just put a brave face on it basically. So the fact that I had this person outside of those sort of circles of immediate friends and family was really, really useful.

What were your concerns and fears at that time? Do you remember? I mean'

I guess like anybody you kind of think, it wasn't a kind of regular fear that I had in my head. It was just kind of every now and again you kind of think, 'Oh is this going to go away? Am I going to get better? The doctor's saying six months of chemotherapy but is that right? Am I going to be here 12 months down the line?' That kind of thing goes through your mind.

So you were afraid that you might die?

Yeah, yeah I guess the most extreme thoughts, they wouldn't happen that often, but yeah you would kind of think, 'God, is this it? Is this going to be the end?' basically. You know, 'Have I done enough in the world, already?' I was quite young at the time, I was 21 and had only just kind of started living and you kind of think, 'Well, if this is it I've got to get as much done in'' and I wasn't really doing it. I was kind of, it does kind of play on your mind and you think, oh well, is everybody telling you the truth? And you just kind of have to trust them I guess. It is down to trust and'

And I mean throughout the treatment we did actually go into separate rooms because I found that I would wake up through the night with palpitations and real terror, I mean despite, you know, throughout the chemotherapy, although I'd been given the good news, I think the initial news was still there, there's still the scare. The fear of that was still there and so, I mean my heart would be thumping like Big Ben and so again part of trying to be positive, rather than disturb, I was in another room and I used to just, if I woke up, rather than lie and worry, I started writing a journal and I started writing, all the negative thoughts that were in my head I wrote down. And that usually helped to calm me and that was therapeutic actually and it helped. And it meant I didn't have to worry about disturbing him through the night. Some nights I wrote all night, but I just wrote out all the negative thoughts, and I had a negative and a positive side of the page. But that helped me cope with it and I suppose he knew that I was doing that, and it meant that I could actually put on a more positive face because I was dealing with it, I tried to kind of, because I was aware that he was suffering so.

And another important part of when I was going through the worst of it, and a real scare, I remember confronting death actually, and at one point a tremendous peace, I remembered thinking, 'Well what if I am going to die? What is the worst thing I can feel?' You know, I mean what's worst? And I remember actually thinking, 'Well', it's being less scared of it, and that was quite important. But I think, I'm sure that helped actually, not being scared of death and being forced to confront it and really face up to it, and just take life as it comes. I'm sure that helps as well.

Some people found it difficult to deal with other people's feelings as well as their own. That led some to try to hide how ill they felt and to maintain a sense of normality, particularly for their children, and also to avoid talking about their fears, or go to hospital appointments alone.

A few people had never thought they would die from their lymphoma or that their lymphoma experience had been unduly worrying or traumatic.

And you get a bit of a sort of, 'Oh dear' type of reaction when you find out what it is, but then I just thought, well everybody had, it was all sort of organised, my radiotherapy was organised, the plastic mask which I had to wear when I went for my radiotherapy was all made to measure, which was nothing terrible. It's been a very unintrusive experience. It really hasn't been traumatic at all.

Really I feel that other people's concern was more apparent than my own, about my own health, I just felt totally confident with the people who were looking after me and I didn't find it a stressful or traumatic experience. It could change because this is one of those cancers that is prolonged, it's not going to go away, but it's not interfering in my life and if anything it makes everything that much nicer because you know that it's not going to go forever, it was a good wake up call that's for sure.